Last reply 2 years ago
RRMS to secondary progressive MS

I was wondering at what age MS changes from relapsing/remitting to secondary progressive. I think that for the majority of MSers it is around 50 – or am I totally wrong and age does not play a role?

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3 years ago

That is a excellent question Caterpillar! I’ve been wondering the same; whereas I was just diagnosed! I’ll also be turning 50 this year! It’s been 3 months today since my initial MS attack! I got hit pretty hard (hospitalized)! Secondary progressive has been on my mind lately!

Someone out there should have a better idea…….let’s hope!

3 years ago

DMDs have changed a lot of things when it comes to progression of our disease. Before DMDs 50% of people moved onto SPMS within 10 years of the initial onset, 90% within 25 years. Regardless, 40 seems to be the average age of progression and each year beyond this increases your risks quite a bit.

Note: these numbers are estimates as most studies fluctuate with regard to how many years it takes.

3 years ago

I have read at least one researcher describe secondary progressive as a useless term. The CNS has a natural ability to repair itself using a “neuronal reserve”. The extent of the repair is limited by the neuronal reserve and the aging process. That said, the line between RRMS and SPMS is grey, if it exists at all. The aging process is associated with normal brain atrophy in our senior years that limits our ability to overcome MS damage.

3 years ago

This issue is as clear as mud. On the basis that no two people suffer the same with MS, it’s difficult to specify when Relapsing/Remitting MS (RRMS) becomes Secondary Progressive MS (SPMS)

It’s all to do with your clinical history and how you relay that to your Neuro. In my case, it seemed a very subjective decision.

But, here’s some details :-

3 years ago

I’m always wondering, too. And when I ask the question to the MS team, I get told ‘it’s different for everyone and look how well you’re doing’. I think they say this because I was dxd at age 53 and the accepted wisdom is that the older you are at dx, the faster you go to SP. I do know that as @stumbler says, it’s not at all clear-cut and that neuros will not generally give an instant dx to SP. It’s a wait and see approach, and they are the more reluctant to pronounce because presumably your entitlement to DMDs finishes, so they have to be pretty certain. Reading the Barts blog, it’s also clear that as @mbrsinc says, your capacity to deal with the nerve damage depends on how much neural reserve you have. Presumably the greater the reserve, the longer it is before the brain can’t repair any more and you go into SP. And I’ve read that neural reserve is greater in people who’ve gone through higher education (or its equivalent in the workplace) and have/have had an intellectually demanding job. And it’s worth looking at the Barts blog on how to preserve brain health – you get into the live well/do puzzles/get enough sleep mantra, which I’m sure you’re familiar with.

3 years ago

I was 49 when dx’d @cameron . I worked all my adult life as a SW engineer in challenging environments from military defense simulations to commercial data communications. I became unable to do that work almost immediately after my first major attack. I have diverted all of my attention to staying informed about the MS drug pipeline. I participated in the tecfidera trials after being among the earliest on tysabri. I started Gilenya the first month it was available after becoming allergic to tec. I have been waiting for the next “big thing” to halt my disease. If labels are a problem for your provider, then you should know that Lemtrada is approved for all “relapsing forms of MS”. It is the ONLY drug that clinically proved to halt and in many cases (off the record) reverse MS, or more correctly let the neuronal reserve have a chance to catch up repairing as much as possible. Relapses can be defined clinically or via MRI. In other words relapses are just as ambiguous as a diagnosis that tries to devine a particular stage of MS with grave implications of our available treatment choices. One lemtrada research investigator says you should treat MS at all stages and that those that have suffered the most seem to benefit the most from lemtrada. I have suffered a great deal (added just for context). I am getting treated asap. BTW, he also said the payers have been looking for any reason to label patients.

3 years ago

@mbrsinc You say that you became unable to do the work you were doing because almost immediately after diagnosis. Do you mind me asking what the problem was: fatigue/concentration/mobility issues?

I have been watching Lemtrada closely – my issue with it is that the trials at Cambridge that show effect recruited early MS patients ( up to 3 years since RRMS diagnosis). The trials they did earlier on with SPMS did not show effect. I am still RR, but by no means “early” in the disease course 9 years into it and am simply afraid that I can get the side effects ( other autoimmune disease) without the hoped for effect on my MS.

@cameron I do understand that neuros are careful giving SPMS label when it has consequences for DMD access. But at some point it becomes pretty obvious that the deficits are not going back and the situation is changing. That is probably the point when the repair mechanisms do not work as well as before(because we get older?) and the “brain reserve” cannot cover up for the losses.
I guess we have to try and “stay young” by doing all the so-called right things and hope for the best 🙂

3 years ago

@caterpilar : Both of your questions assume that you cannot get better after an imaginary line has been crossed. Neuros know better if based on nothing more than anecdotal information from MS patients treated over the years that the line is not precise but do know that the payers will cut off patients with a progressive label. Big pharmas can’t make a business case to spend the hundreds of millions again after covering 80% of the market with tests aimed at RRMS. So the 20% left are out in the cold and had better have an advocate or get educated to self-advocate. The early lemtrada trial that included some patients described only as SPMS apparently had a sample that did not have previous experience with the currently available DMDs which protect us. I heard from a lemtrada trial investigator that is conducting the most recent trial on difficult to treat patients had a change of heart and recommends treatment beyond the traditional. There are medical professionals with MS themselves that sought treatment at their own expense offshore from the US that were about 60 years old and report benefits in only a few months. I have a friend who is a nurse that did not improve much from lemtrada until the third year and she retired her wheel chair and started walking 4 miles a day. She described having every symptom that I have and taking the same medications until lemtrada. She began a petition drive for it’s approval in the states. Another US Nurse practitioner with MS has recovered remarkably after being dx’d 9.5 years previously and taking lemtrada offshore. Ask @us-emma about her experience and read her blog that logs it all in detail @

As far as myself: I was hit hard with a very aggressive attack that caused a variety of symptoms that left me too ill to work and no diagnosis for a year. I had all types of sensory issues, associated with significant pain and anxiety. My career was difficult enough when well and impossible when so ill. I became better after I chose tysabri which helped my recovery because it halts MS much like lemtrada. I unfortunately did not agree with tysabri and had to give it up after 1.5 years. Lemtrada only requires 8 doses completed in 12 months instead of continuous dosing of everything else. I would gladly trade the pain and suffering that I deal with now while on a lifetime of DMDs that have dubious side effects for lemtrada that gives me a chance to improve after only 8 doses even with the risks primarily of an easily managed thyroid condition that statistics show one third of MSers develop anyway.

2 years ago

@caterpillar I was dignosed at at 23. Recently I have turned 53 and have crossed the line to SPMS. But as always, every person is different. We are all snowflakes I guess 😉

2 years ago

l have read in two different medical papers stating that after the age of 50 body functions naturally tend to change and slow down the progression of MS, if you diagnosed at a later age and fewer relapses, however it is not the case if you are diagnosed at an early age and had a series of relapses along the way.

This was my understanding …

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